At noon one year ago today, my sweet, intelligent, creative, and kind daughter died from a form of childhood cancer. She was 12. I have thought an awful lot about what to post today to mark this awful anniversary. I could write about childhood cancer (I post plenty of statistics on a regular basis on this Facebook page). But what I really, really need to do today is remind everyone of what--of WHO--we lost on September 20, 2013. I apologize in advance if it seems a bit of a mommy brag. The things that just keep rolling around in my head lately basically center on the fact that a truly wonderful person, who had the potential to do great things in her future, was ripped away from her family and her friends and her community that day. I guess I dont worry so much that Julianna will be forgotten as much as i want this anniversary to be about honoring her. I feel like shouting her uniquely fantastic qualities from the rooftops. I want to scream at cancer like it is a person I could kick and slap (though you should know I am NOT a violent person),This is what you took from us! So here are a few examples of true stories about our Julianna. I hope they give you a glimpse of what her family and friends miss about her, and how much this world lost when she died. Julianna was always doing things that surprised us. She walked early, talked early. She had a way of looking at everything and everyone around her that made it clear she was taking it all in--studying it and appraising it--even as a baby. And when I say she talked early, I mean full sentences as an 18-month old--giving me directions on how to serve her a slice of pizza. I can still see her pushing her tiny chubby fingers close together to demonstrate, telling me cut in tiny YITTLE pieces Mama! She just easily did whatever her sister Katharine (two years older than her) was doing. You would think this would be frustrating to J as the younger sibling but it never occurred to her that she could not keep up. I used to have to make up pretend math homework for her when she was 4 and 5, which mirrored whatever 1st grade homework Katharine was doing at the time. She happily completed it, doing everything correctly (though some of the numbers were written backwards). She even wanted me to check it with red pen and put a big smiley face on it. Julianna saw everything, learned it quickly, and then remembered it all. When Julianna was in PreK she started reading street signs and rather swiftly was able to read pretty much very picture book we put in front of her. Trust me when I tell you we never attempted to teach her to read early. She just did it. By the time she reached kindergarten I was told by her teacher that Juliannas reading was tested, and she read at a level past the end of 2nd grade, with both fluency and comprehension. Her teacher made a special plan to work with J, since she read like a 3rd grader but was still only 5. Julianna was kind, and never seemed to need attention for her accomplishments. You can say that we as her parents taught her this, but she did surprisingly unselfish and sweetly kind things even as a young child. I just shared with you how advanced a reader she was at 5, right? In her kindergarten, every week each child would be matched up with a first grader from another class, and the older child would read to the kindergartner. It was a great way for the kindergartner to see how they would soon read. A type of mentoring program. Yet this situation was different for Julianna, who truly could already read circles around typical first graders. Her teacher told me that she had been concerned how Julianna would react. Would she say I can read better than you! Would she grab the book away and insist on reading it herself? Nope. I was told Julianna sat quietly, smiling as her first grade mentor read to her in the typical 6-year old halting style. And when the child finished the book, do you know what my 5-year-old daughter said? Thank you. That was it. Julianna was always surprising us with her abilities and her unassuming, kind nature. Her quiet sweetness sometimes made those that didnt know her realize that she was also incredibly secure, strong, and determined. Julianna was a persuasive speaker with lots of creative ideas. She was regularly making up games, or coming up with alternate rules for our existing board games, which always benefitted her in some way. She was also very good at negotiating her way out of her least favorite chores by convincing her sister to trade them for ones she liked better. We were sure she would become a very successful attorney or business person with those qualities. But, as I started this long anniversary post--my sweet intelligent girl with ALL those wonderful qualities was ripped away from us by cancer. I miss her very moment of every day. In some ways I still cant quite believe that this--THIS!--is how her life worked out. That she suffered terribly, and died. At 12. It should not have been this way. And if I spend a lot of time and energy spreading childhood cancer awareness and advocating for more research funding, youll know why. I dont want the next child, YOUR child, ANY child to go through what Julianna did. I dont want families to bury their children because their antiquated toxic cancer treatments were ineffective and gave them few (even NO) chances for survival. Things should be different. We should have our daughter. Katharine should have her sister here with her. And if I have to be a pest, a crusader, a renegade to help change things, I will. If you knew Julianna and have any stories to share about her, we would love if you do so in the comments. On this anniversary we want to remember her special qualities and smile about her, even through our tears. Love, The Edel Family
Posted on: Sat, 20 Sep 2014 11:49:53 +0000
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